The following taken form the Daily Telegraph may help explain why she did it. We can only pray for them all.
How do you describe life as a parent of a child with profound or life-limiting
disabilities? “Inhumane. Insane. Pushed to the wire.” Henrietta Spink veers
from the language of despair to that of hope. “It has been an extraordinary
journey,” she says, with some positivity, of the past 26 years spent raising
her two sons, both of whom need round-the-clock care. And then: “Our life
has been destroyed.”
Henrietta, 52, and her husband Michael, 57, an expert in Islamic art,
understand better than most the tragedy – there is no other word – that is
currently unfolding in south London, where
Tania
Clarence, 42, has been charged by police over the deaths of three of her
four children: three‑year-old twin sons Ben and Max, and
four-year-old Olivia, all of whom had a progressive genetic illness called
spinal muscular atrophy (SMA), which impairs physical abilities such as
moving, walking and breathing, but does not affect mental development. The
children’s father Gary, 43, a director at City bank Investec, was away with
the couple’s eight-year-old daughter in the family’s native South Africa
when the three died.
“There have been times,” says Henrietta, “when I have wished all four of us
were dead. It is remorseless, unrelenting, a situation for which there is no
manual, an emotional black hole.”
Henrietta has cared for her sons Henry, 26, and Freddie, 22, unstintingly
since they were born. Henry is severely epileptic, cannot walk or talk, and
is incontinent. Scans have detected no brain damage but he exists in a sort
of stasis: an adult body suspended in the world of a three-month-old baby.
Solidly built and 5ft 11in tall, Henry is still growing, yet he is barely
conscious of anything around him.
Freddie is autistic, hyperactive and, although 17 stone and 5ft 9in tall,
behaves like a three-year-old. Born with a diaphragmatic hernia – his
stomach organs were in his chest at birth – he was immediately placed on
life support, where he suffered a stroke, which went undetected for 15
years.
The Spinks understand that there is an unknown genetic condition which affects
both boys. Scientists at the University of California Irvine have been
working on a sample of the boys’ DNA for five years and believe they will
soon isolate the responsible gene. The hope that engenders – of an
explanation, if not some possible therapy – keeps Henrietta going. But, she
explains, without some prospect to look forward to, life could be too bleak
to face.
“The boys are currently able to attend a specialist college in Truro [close to
their home], where Henry is taken swimming and given multi-sensory
experiences. Freddie is taught basic life skills there – like crossing the
road. He will never learn to do it alone, but he enjoys going.” But during
holidays such as Easter, the family work alongside a team of carers.
Henrietta and Michael are currently wiped out with exhaustion. Because outside
term-time, life returns to the grinding routine that has dominated the past
two and a half decades. “Every night, one of the boys will need help at some
point. Freddie wakes properly at about 4am or 5am, and from then on one of
us is up monitoring him. He could hurt himself otherwise, for instance, by
pouring boiling water over himself,” she explains. “Then I do six lots of
washing because Henry is incontinent [and Freddie needs total assistance]
and I spend two hours a day cooking to ensure they have proper nutrition.
Freddie has a severely restricted throat, so his food must be chopped
minutely or he can choke.”
All day long the couple lift and carry their sons – Freddie can only walk with
a carer on each arm – and they try to stimulate or calm them. Meanwhile, the
financial support the couple receive is so complex that Michael spends two
hours a day on spreadsheets, she estimates.
Then there are the endless legal battles to fight, which have driven Henrietta
mad with frustration over the years. They challenged Wandsworth council when
the couple lived in London. “We now have a good package of care in Cornwall,
but we feel we have to be prepared to battle on a regular basis to keep it
from being cut.”
New legislation, including the abolition of the Independent Living Fund, will
see the family perilously short of money again. The forthcoming changes to
the Disability Living Allowance are terrifying. “I just wish you could tick
a box saying 'nothing’s changed’, but every form starts from scratch. It is
exhausting.”
There is no escaping the fact that the totality of managing both boys is
utterly time-consuming and the equivalent of a part-time job, meaning it is
impossible for either of them to hold down full-time employment, which adds
to the financial worries.
Henrietta’s friend Anne Jones, 62, who lives in west London, understands. Her
son Robert, 26, was born with agenesis of the corpus callosum – a rare birth
defect where the corpus callosum, the band of white matter connecting the
two hemispheres in the brain, fails to develop normally.
“Robert doesn’t speak – just the odd word, although he understands us well,”
Anne says. “But he has no concept of danger, so he must be watched 24 hours
a day.”
Her son is now living in a care home in Suffolk and visits during the
holidays, but for the first 17 years he was at home. “I was on my knees,”
she says, candidly. “He’d get up at 5am and, once up, you’d have to be. My
husband or I would take him to the loo, wash and dry him, dress him, get him
downstairs, get him to eat. It was constant care and vigilance.”
Although she is sanguine now about the exhaustion, and tries to defuse tense
situations with humour, she regrets the impact it had on his two younger
siblings, who were bullied at school because of their “different” brother.
“Their lives had to revolve around Robert’s needs, which wasn’t fair. We
simply had no spare attention.”
There are 49,000 children and young people in the UK living with a
life-limiting or life-threatening condition, according to the charity
Together for Short Lives, which is campaigning for more help and support,
including financial aid, for families. Until 2009, when their six-year-old
son Ivan died, David and Samantha Cameron were among that number.
The disability charity Scope has just released a report that shows how life
simply costs more when a family member is disabled in some way. Richard
Hawkes, chief executive of Scope, says: “Disabled people and their families
already have to buy things – like specialist equipment – that most families
don’t have to budget for. Disabled people and their families also pay more
for the everyday items such as taxis.”
The impact cannot be overstated. Anne’s husband Jeremy, an architect, is still
working at 70. The Spinks were forced to sell their Battersea home due to
debts. “The financial strain is overwhelming, but Michael can’t afford to
fall apart,” Henrietta says. “The longing to have time for one another, for
sleep, is devastating. The loneliness of our situation is unbearable at
times.”
Ultimately, it is not just the forms, the worries, the loneliness, the endless
broken nights that affect these families most (though none of those factors
should be underestimated); it is a constant fear for the future that seems
to hurt most.
“At the moment Robert is safe and well looked after,” Anne says. “But if that
changed, the home was sold or closed, he would be devastated, and so would
we. I hope he will be there till he dies, and that after we go, his siblings
will watch out – make sure his paperwork is done, take him for weekends –
but I wouldn’t want them to have to take full charge. It would destroy their
lives.”
Henrietta does not even have that peace of mind. “I worry about what happens
if one of us dies. How would the other cope? And what will happen when we
both die? The boys – properly cared for – have a 'normal’ life expectancy.
There is no reason why they should not live into their seventies.
“When I was younger I couldn’t look ahead. But now you realise you are over
halfway through your life. It is a terrifying thought. Who will take my
role? Who will protect them?”
She gathers herself. “Not a day passes when I don’t think we will find the
answer. I believe the gene sequencing will explain what has happened and
lead to a treatment. Life is about polishing the diamond – we absolutely
love our boys and simply hope we are doing our best.”
The identities of the Jones family have been changed.
